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Journal of Clinical Pathology 2003;56:268-270; doi:10.1136/jcp.56.4.268
Copyright © 2003 by the BMJ Publishing Group Ltd & Association of Clinical Pathologists.
Journal of Clinical Pathology 2003;56:268-270
© 2003 BMJ Publishing Group & Association of Clinical Pathologists

ORIGINAL ARTICLE

Down’s syndrome screening is unethical: views of today’s research ethics committees

T M Reynolds

Correspondence to:
Correspondence to:
Professor T Reynolds, Clinical Chemistry Department, Queen’s Hospital, Belvedere Road, Burton on Trent, Staffordshire DE13 0RB, UK;
Tim.Reynolds{at}Queens.Burtonh-tr.wmids.nhs.uk

Background: Screening for Down’s syndrome forms part of routine obstetric practice. Ethical considerations relating to genetic screening form a major part of the workload of research ethics committees. This study investigated the attitudes of research ethics committee members to several conditions varying in clinical severity and prognosis, including Down’s syndrome.

Methods: The members of 40 randomly chosen research ethics committees were surveyed. A simple questionnaire comprising 19 clinical scenarios based around four "clinical" conditions was designed to review conditions that were potentially embarrassing, affecting life span but not mental ability, premature death, and intellectual impairment with a risk of neonatal cardiac defects (Down’s syndrome). Screening tests with different degrees of effectiveness were described and the diagnostic test descriptions ranged from having no risk to an unaffected fetus to causing spontaneous abortion of two normal fetuses for each affected fetus identified. Replies were graded on a scale of 1 to 5.

Results: Seventy seven replies were received from 28 different research ethics committees. Screening was supported for treatment of a life threatening condition (95% in favour) but screening for conditions of a slight increase in premature death (14% in favour) or cosmetic features (10% in favour) were considered unethical. Views were ambiguous (49% in favour) about conditions involving significant shortening of lifespan. Down’s syndrome screening was considered more ethical when described as a serious condition (56% in favour) than when the clinical features were described (44% in favour). Once increased rates of spontaneous abortion on confirmatory testing were added, 79% (21% in favour) and 86% (14% in favour) stated that screening was unethical (for "serious" and "clinical features" descriptions, respectively).

Conclusions: Down’s syndrome screening raises ethical concerns about genetic testing in general that need to be dealt with before the introduction of any prenatal screening test.

Keywords: Down’s syndrome; ethics; trisomy 21


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This article has been cited by other articles:

  • Bittles, A. H., Bower, C., Hussain, R., Glasson, E. J. (2007). The four ages of Down syndrome. Eur J Public Health 17: 221-225 [Abstract] [Full Text]  
  • Wildschut, H. I.J., Peters, T.J., Weiner, C. P. (2006). Screening in women's health, with emphasis on fetal Down's syndrome, breast cancer and osteoporosis. Hum Reprod Update 12: 499-512 [Abstract] [Full Text]  
  • (2004). The public must decide whether genetic screening is ethical. J. Med. Ethics 30: 62-62 [Full Text]  

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